1/ In March 2023, I received a lumbar puncture. This was key to receiving my chronic inflammatory demyelinating polyneuropathy #cidp diagnosis. This 🧵 is on my experience with identifying and treating #autoimmunedisease. I'll also be sharing some 🧵s I posted previously on the Other Place. - ThreadSky

jeffmyau.bsky.social • 76 days ago

1/ In March 2023, I received a lumbar puncture. This was key to receiving my chronic inflammatory demyelinating polyneuropathy #cidp diagnosis. This 🧵 is on my experience with identifying and treating #autoimmunedisease. I'll also be sharing some 🧵s I posted previously on the Other Place.

Comments

athenaakrami.bsky.social•54 days ago

I'm sorry, Jeff, for everything you've gone (& still are going) through. I wish all the best w the recovery & hope you're in the 40%.
Also, thanks v much for documenting & sharing your journey.
You inspired me to perhaps talk about my partial recovery from long covid & where I'm after almost 4yrs...

jeffmyau.bsky.social•54 days ago

Thanks, Athena! I’m happy to hear from you because I remember seeing your tweets about long COVID in the early days of the pandemic. I have often wondered how you were doing. I’m glad that you’ve experienced some recovery and I hope you continue to improve! Stay well!

jdcollinstx.bsky.social•74 days ago

Thank you sir.

collette71.bsky.social•74 days ago

Nice to meet you. Not many other CIDP folks around to share in our crazy body and mind life. I am stressing bad right now, right knee op on Jan 2 so I worry how it will affect my nerves with CIDP.
I hope your well.

jeffmyau.bsky.social•74 days ago

Good luck with your surgery! Stay well!

collette71.bsky.social•74 days ago

Thank you, this is my second knee replacement my first one since my diagnosis. Very nervous.

ninjabi.bsky.social•30 days ago

I’m so sorry you’re going through this as well, but glad you could identify your subtype. I was on IVIG from 1996-2007 for this, was only able to go to nursing school after my spontaneous remission. Came with a decent side of dysautonomia and an eventual hEDS diagnosis.

ninjabi.bsky.social•30 days ago

The name change was interesting to read because I did that as well and so have several other people I’ve met with CIDP. It’s incredible how much the disease can steal from your identity. And after remission, the fear of relapse is so intense. I spent a solid hour earlier trying to find data

ninjabi.bsky.social•30 days ago

About flu vaccination and relapse. I was told in the 00s not to get flu/tetanus/pneumococcal, but now really should with a possible flu pandemic coming.Only study I found readily was 2009, because it’s just not common enough to keep testing. Worst fear is being trapped in my own body again.

ninjabi.bsky.social•30 days ago

I hope you continue to be on the mend and that you find great joy and deep satisfaction in helping advance this topic. There’s so much more we need to know about the disease and how to prevent/treat it.

jeffmyau.bsky.social•30 days ago

Thank you for your well wishes and sharing your experience! I hope you are doing ok and avoid relapsing! Take care!

drussellmrichie.bsky.social•50 days ago

Thank you for sharing your story. So many parallels to my own experience (years ago) with cancer and chemo, from steroids, to PN, to the need to advocate for oneself/manage one's complex treatment -- and the privilege it unfortunately takes to do that.

jeffmyau.bsky.social•50 days ago

Thank you! I hope you are doing well now after your health journey!

drussellmrichie.bsky.social•50 days ago

Thank you! Doing much better. Wishing you the best as well.

etzsepp.bsky.social•40 days ago

Did you also have fatigue or cognitive issues ?

jeffmyau.bsky.social•40 days ago

I never experienced cognitive issues. I suspect that any fatigue I experienced was due to muscle weakness and atrophy rather than a central nervous system effect. Afaik, all of my symptoms were attributable to peripheral nervous system changes.

dbdugger.bsky.social•54 days ago

Jeff, terribly sorry to hear that you find yourself suffering from CIDP, as it is the result of this country ignoring the work of Kenneth Podell who advanced the hypothesis individuals would live with the functional equivalent of HIV Associated Neurocognitive Decline on September 29th, 2020.

dbdugger.bsky.social•54 days ago

This paper was retracted and you find yourself among the victims of its retraction.
Uncanny similarity of unique inserts in the 2019-nCoV spike protein to HIV-1 gp120 and Gag https://www.biorxiv.org/content/10.1101/2020.01.30.927871v1

dbdugger.bsky.social•54 days ago

COVID-19 variants as moving targets and how to stop them by glycoengineered whole-virus vaccines https://pmc.ncbi.nlm.nih.gov/articles/PMC8346202/
"Gp120 is the envelope glycoprotein that mediates HIV infection of host-cells, analogous to the role of S protein in SARS-CoV-2."

dbdugger.bsky.social•54 days ago

The HIV positive suffer from Chronic Inflammatory Demyelinating Polyradiculopathy as a consequence of the protein mentioned above, gp120.
Anti-neurofascin 155 Antibody-positive Neuropathy in a Human Immunodeficiency Virus-infected Patient https://pubmed.ncbi.nlm.nih.gov/37380455/

dbdugger.bsky.social•54 days ago

As a member of the HIV positive community, I find what has been done to millions by those who drew parallels to ME/CFS to be unconscionable and hope that their moral injury never heals. What a depraved group of people.

simonesprenger.bsky.social•39 days ago

📌

jeffmyau.bsky.social•76 days ago

2/ In August 2022, I noticed numbness and tingling in my hands and feet. The stocking-glove pattern is common in peripheral neuropathies because the nerves that innervate these regions are the longest in the body. If you experience these symptoms, get them checked!

drauriol.bsky.social•53 days ago

This is fascinating.

Does the numbness ever localise to a specific side ie left vs right? Or is it universally on all extremities?

jeffmyau.bsky.social•53 days ago

For me, it was bilateral, although it started on the left (both hand and foot). I’ve seen reports indicating that some peripheral neuropathies can be associated with unilateral symptoms, even patchy distribution that doesn’t conform to distal-proximal progression.

jeffmyau.bsky.social•76 days ago

3/ Brain and cervical MRI were normal. Nerve conduction/EMG were normal. It wasn’t clear what was causing my symptoms, but at least we are ruled out a lot of scary possibilities. We settled on a wait-and-see approach.

jeffmyau.bsky.social•76 days ago

4/ By January 2023, I had developed a slight tremor. Nerve conduction/EMG now revealed clear changes: Slower latencies and reduced amplitudes. Deep tendon were reflexes absent. Something was happening in my peripheral nerves. Perhaps I overdosed myself with Vitamin B6 (https://x.com/JeffMYau/status/1680592964999839744)?

jeffmyau.bsky.social•76 days ago

5/ In March 2023, I had my spinal tap. Elevated CSF proteins with normal cell counts, plus my EMG results and symptoms, was enough for my neurologist to diagnose me with #CIDP, an autoimmune disorder where the immune system attacks the peripheral nervous system (https://pubmed.ncbi.nlm.nih.gov/34085743/)

jeffmyau.bsky.social•76 days ago

6/ Why did I develop CIDP, an idiopathic disease? My symptoms began 1 month after my 1st and only confirmed #COVID infection. COVID wreaks havoc throughout the body #LongCovid and emerging data (https://www.nature.com/articles/s41584-023-00964-y) links COVID with elevated risks for developing autoimmune diseases. 😷

jeffmyau.bsky.social•76 days ago

7/ Diagnosis in hand (one growing more numb and weaker 😩), we focused on treatment options, all aimed at stopping my immune system from attacking my peripheral nerves. This meant immunosuppression #immunocompromised #maskup: 1st line treatment comprises #corticosteroids, #IVIG, or #plasmapheresis.

cyan0bacteria.bsky.social•73 days ago

It’s amazing that you were able to identify the autoantibodies causing your CIDP. Efgartigimod appears to work well for identifying autoantibody driven disease. That followed by off the shelf CAR-T could be the path to cure these conditions [https://www.cell.com/cell/abstract/S0092-8674(24)00701-3].

jeffmyau.bsky.social•73 days ago

Thanks! Yes - I’ve been following the development and testing of CAR-T therapies closely!
I wasn’t aware of efgartigimod, but good to see it’s effective for treating myasthenia gravis and potentially other autoimmune disorders!

cyan0bacteria.bsky.social•73 days ago

It will likely be useful for any IgG autoantibody driven condition. @lauraapace.bsky.social is working on a program at Stanford to use it off label in suspected IgG autoimmune conditions. She’s had some really interesting successes. The main problem currently is cost.

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